Yesterday was a home health nurse visit. The first since Thursday’s failed cath urine catch attempt. I had never heard of someone being so swelled that a cath tube won’t go in. Definitely a first for me.
The visit didn’t go well. She was tachycardic in afib (pulse was 146) but BP was low 100/50. So top number is now also dropping. Aunt pitched a fit. Said hospital doctors told her that her heart was fine. Nurse said No they told you that you didn’t have damage which means no tears no scarring. She told her that the function of her heart is bad. Her ejection fraction was 42. She’d had a mild heart attack while she was there. Aunt argued & said she didn’t have any chest pain so she didn’t have a heart attack. Nurse explained heart attacks can happen without noticeable symptoms beyond testing. Nurse examined the tiny amount of urine in her pee pad & said it has a strong odor & is a dark yellow color indicating her kidneys aren’t working well. Guys, in order to get that little trickle it looked like she was trying to poop. In a nutshell, in a week’s time she’s gotten worse- which I knew but nurse confirmed. Her hands & feet are now dimpling when pressed, which means a lot of fluid retention despite lasix & flomax. And she’s taken it upon herself to add an extra 1/2 clonapin 3x a day (bringing her total dosage to 4.5 mg) because she swears her kidneys stop hurting & she can breathe better - all while she’s visibly gasping for a breath & has now started rattling from the excess mucus. The end result was the nurse calling to have an immediate home hospice eval. Which of course causes another tantrum by Aunt. She won’t just be thrown away, she says. She wants the fluid drained, she wants an implant she saw on a commercial or a transplant. She wants them to fix it. So nurse had to explain it can’t be fixed. She’s received all the treatment possible. There’s no cure for her conditions. All they can do now is make sure she’s comfortable & not suffering. She can’t have an implant; they’re not designed for what she wants it to do. She’s not a candidate for a transplant. They can’t drain the fluid because it’s in multiple pockets spread around her lungs & she can’t hold herself still on her side anyway. She said well they bent her over a table last time, to which I replied “last time you could stand & walk & that was in 2018 they did that” & it was in one location not scattered. The nurse believes that she will likely need some sort of sedation because the aggression & tantrums she throws are out of control. And because her delirium & cognitive functions are really bad. She informed us, for example, that she’d had a long talk with God & he told her she could stay forever & she’d be all better by today & could get out of bed. Do you know what’s going to happen when she wakes up & isn’t “all better”?! She’s gonna go bat poop crazy.
I'm just waiting, praying, & hoping. Hospice is supposed to be out tomorrow (Wednesday) for their eval. I really hope they don’t listen to what she tells them - or doesn’t tell them. I hope they listen to what I say & what I’ve seen. And I hope they get me help. I don’t need 24/7 assistance; I need help through the day. Getting her cleaned, helping when she moves her bowels, getting her bathed properly. It’s getting harder to roll her & harder to hold her & clean her at the same time. She has a hoyer lift but refuses to allow it to be used - she claims it hurts her leg (the same leg that she claims doesn’t ever hurt) & she doesn’t like feeling like she’s falling. I’m terrified that hospice is going to decline her & I’m stuck with no help as she gets worse.
I would seek to get her into a long term care facility, private pay until her money runs out and then apply for Medicaid.
Hospice is not going to provide you with what you need, maybe a bath Aide 3X a week.
Her delusional WANTS do not outweigh your needs.
Hospice can be called in, and not called "Hospice". Just 'better care'.
She comes across as not of sound mind (I believe God speaks to us, as do many people, but I'm kind of doubting her beliefs as being a little off the wall--well, a LOT off the wall. She's not making sense!)
A psych eval is often a part of a Hospice eval. I hope she gets one.
When you get Hospice involved, ask them for help in learning how to move her so YOU aren't wrecked.
Dont' worry about the dosage of ttranqulizers. They are the best thing for the hysterics that often accompany EOL. Just keep her comfortable.
A bigger bed might not be a bad thing.
Curious: WHAT does she want 'transplanted'? Kidney? You know that's not going to happen. You don't mention her age, but if she's over 75, transplants are unusual. AND it won't solve her problem.
Do know that I have seen people live YEARS with an ejection fraction in low 30s, so people adapt round that, though with her weight Aunt's heart is stressed in any circumstance, and this complicates things.
You yourself are not going to see a whole lot of help with the way hospice currently works, so be certain you understand. It is often an aid for bathing only three times a week, RN checkin when needed or on schedule, clergy when you request, social services when you request, and at the point you cannot do this at home you SHOULD request their help for either in facility hospice or for SNF or NH placement.
I wish you the best. I will be gone off Forum for about a month, but will look forward when I am back to your update to see if Aunt will accept this help. Encourage her to look on this as FREE HELP for her and for YOU. But don't lie about the fact that this is considered end of life care, with the supposition that there is no longer any medical facility care or treatment that can "cure". Tell hospice to level with Aunt about all of it. It is then her choice.
she doesn’t want to die in a facility she wants to be at home. That’s her wish. But she has absolutely no desire to do a single thing for herself, including changing her channels, picking up her cup, & down to body functions- she’s now demanding a catheter so she doesn’t even have to urinate for herself. And she wants a rectal tube & permanent laxatives since no one will dig it out for her. ?! I understand there’s a level of giving up to be expected, but these demands are getting ridiculous & she *still* swears she’s getting better even when she’s clearly not. It’s all this back & forth that’s making things much more difficult. And because she’s still classified as competent -which I don’t understand because she’s obviously not- I can’t even take over her medication situation even after she likely overdosed slightly on klonapin for 2 days before telling on herself. And I can’t tell the difference in symptoms because she already has trouble breathing & the BP issues. I’m in a lose-lose situation with no where to turn. She’s been dialing random phone numbers & talking to strangers telling her whole life story, where she lives, etc. so we had to put restrictions on her phone so she can only make calls from numbers in her contacts. But that doesn’t block her from doing the same to anyone who calls her phone. She gets in a confused state & starts ordering all sorts of things. She spent all but $20 of her social security last month on buying whatever & double or triple ordering. So she didn’t have enough for any of her copays or monthly bills & we had to take out a loan to cover everything. She sent little girls dresses & toys to her daughter….she doesn’t have any granddaughters only grandsons. So now her debit card has been locked out & she can’t make any payments by direct debit from her account either. That has been assigned to her POA now. It’s just getting so bad I don’t know what else to do. I’m so stressed I have to force myself to eat & I'm not sleeping well.
THIS. This is what is going to happen. Auntie's WANTS are not as important as your NEEDS. I guess you are expected to kill yourself at the Altar of Auntie?
Again, if wishes were fishes..............you know? It doesn't MATTER a fig what she wishes. You are suggesting that a non compliant and non cooperative person has slaves to serve her. She doesn't. Not unless YOU choose to enslave yourself to her. That may sound cruel but it's a fact, and facts in our lives are OFTEN cruel. Your Aunt has been a part of making this bed she lies upon. Sadly.
Caring for Aunt-in-law. 74, permanently bedbound. 512 lbs. permanent broken femur (August 2021). Osteoporosis. Had MRSA in March (before we started giving care). CHF & CKD. Permanent AFib. Severe sleep apnea. Health has taken serious decline. Just spent 2 wks in hospital for 2 drug resistant bacteria in kidneys. On furosemide & Flomax with severe urine decrease but showing signs of retention again. BP avgs 102/54 pulse always below 58. Fluid pockets in lungs (not safe to drain & not enough). Pronounced cognitive decline in last couple weeks. Should we be prepared for death? Drs don’t give any info- a lot of I don’t knows or subject changing. She keeps talking about it, she’s had her will made, & she’s been discussing what needs to be handled with belongings & such. Her rapid general decline has me worried. I’m afraid I’m going to find her gone one morning.
Speak to hospice BEFORE they evaluate the woman. Let them know ALL of this dreadful behavior and nonsense that's been going on. They can get her sedated and breathing easier with morphine, if she's accepted. I don't think you'll get TOO much help though....a nurse once a week, a CNA to help bathe her 2x a week. But being 500+ lbs and THIS combative, the only way to deal with her histrionics is with sedation, imo. She's not used to not getting HER way, your Aunt in law, that much is painfully obvious. And sad.
Me, I'd get her moved OUT of your house and into Skilled Nursing with private pay, then Medicaid if her money runs out. This is the definition of Too Much.
I don't know how you've managed to put up with her for all this time. You are a kind and caring soul, my friend. Wishing you good luck and Godspeed moving forward.
You may just want to introduce the Nurse and aide as "in home" help. Also, there will be no extreme measures taken. If kidneys have failed, Aunt will pass from the toxins in her blood stream. If her lungs fill up with water, she will pass. CHF, her heart could just give out. Her body is shutting down. Nothing anyone can do but keep her comfortable.
denying will change that. She told me I needed to just shut up & leave her alone. So I told her I loved her & walked into another room to decompress. This is really hard. I’m torn between wishing she’d pass now because she’s visibly suffering so much, but also just wanting more time.
Look after yourself, and shut your ears to the impossible demands. You have already done everything you could to improve her life. Don’t dream up more things that you think you ought to do, and don't try to persuade her against her will.
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